This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Saturday, November 26, 2011

I didn't get the job at the neuro rehab clinic. Not that I actually wanted it, knowing that I could not do the commute without a car (Manu needs it most days).

Still, I got all insecure - wanting to know what they did not like about me. Was it my lack of experience? My personality? My tube? What did I say during the job interview they didn't like? Was it my tube? What should I have done different? Questions like these kept spinning in my mind - followed by "What if I never ever get a job as a psychologist?"

"White horse" is my answer to those questions at the moment. If a negative thought like this pops into my mind I say to myself "white horse".

Why?

Read this Zen story to find out...

There was an old man in a village, very poor, but even kings were jealous of him because he had a beautiful white horse…

Kings offered fabulous prices for the white horse, but the man would say, "This horse is not a horse to me, he is a person. And how can you sell a person, a friend?". The man was poor, but he never sold the horse.

One morning, he found that the horse was not in the stable.

The whole village gathered and they said, "You foolish old man! We knew that someday the horse would be stolen. It would have been better to sell it. What a misfortune!"

The old man said, "Don't go so far as to say that. Simply say that the horse is not in the stable. This is the fact, everything else is a judgment. Whether it is a misfortune or a blessing I don't know, because this is just a fragment. Who

knows what is going to follow it?"

People laughed at the old man. They had always known that he was a little crazy.

But after fifteen days, suddenly one night the horse returned. He had not been stolen, he had escaped into the wild. And not only that, he brought a dozen wild horses with him.

Again the people gathered and they said, "Old man, you were right. This was not a misfortune, it has indeed proved to be a blessing."

The old man said, "Again you are going too far. Just say that the horse is back…who knows whether it is a blessing or not? It is only a fragment. Your read a single word in a sentence – how can you judge the whole book?"

This time the people couldn't say much, but inside they knew that he was wrong. Twelve beautiful horses had come…

The old man had an only son who started to train the wild horses. Just a week after he fell from a horse and his legs were broken. The people gathered again and again they judged.

They said, "Again you proved right! It was a misfortune. Your only son has lost the use of his legs, and in your old age he was your only support. Now you are poorer than ever."

The old man said, "You are obsessed with judgment. Don't go that far. Say only that my son has broken his legs. Nobody knows whether this is a misfortune or a blessing. Life comes in fragments and more is never given to you."

It happened that after three weeks the country went to war, and all the young men of the town were forcibly taken for the military. Only the old man's son was left, because he was crippled.

The whole town was crying and weeping, because it was a losing fight and they knew most of the young people would never come back.

They came to the old man and they said, "You were right, old man – this has proved a blessing. Maybe your son is crippled, but he is still with you. Our sons are gone forever."

The old man said again, "You go on and on judging. Nobody knows! Only say this, that your sons have been forced to enter into the army and that my son has not been forced. But only God, the total, knows whether it is a blessing or a misfortune."

Judge ye not, otherwise you will never become one with the total.

With fragments you will be obsessed, with small things you will jump to conclusions.

(as told by Osho)

So yes, "white horse". Things happen for a reason. A much better job might already be waiting for me. I just have to be patient and don't judge!

Thursday, November 24, 2011

My best friend and I mostly text throughout the day, as I don't really have time to talk on the phone while I am at work, but always find the time to send a quick text. And my friend who is a stay-at-home-Mum with two-year-old twins and an almost 3-month-old sometimes simply wants to share stuff with me. I don't get to see the twins very often, usually only every three to four weeks, as my friend lives outside of Vienna, and just recently they have started calling me "aunt" and asking for "Lula"....

Yesterday we were sending a few texts back and forth when suddenly I got another text saying:

"My boys obviously know that I am usually texting with you. As I was just writing you a text, they asked me "where is Lula?" I answered - "at work". And then "where is Man (Manuel)" - again I replied "at work". ;-)

Thursday, November 17, 2011

I am having another job interview tomorrow. Keeping my fingers crossed - it would be literally just around the corner. What a change to a three-hour-commute daily.... I would love to have some more time for myself and for my relationship with M again.

Saturday, November 12, 2011

I haven't been in a real flare for a few months now, almost forgot how awful it feels to be nauseated all the time. Looking back it probably started last Sunday, and maybe if I had taken better care of myself and not given into eating some stuff that I usually don't eat in the past week, I might have gotten away with just a mini-hick-up. It came it the most inopportune moment, as I had to travel to Innsbruck on Thursday for a two day Neuropsych class. Yesterday it got so bad that even water and tea hurt me. I also had so much pain in my lower body. I even had to turn down my feeding rate yesterday evening. I knew that I would only get myself out of this flare if I stay away from food for the next few days, and thankfully as of a few hours ago, I am starting to feel a little tiny bit better. I am on my way home to Vienna right now. Tomorrow I will take it easy and maybe spend a day on the couch (or in bed) with the kitties. And hopefully I will feel better for work on Monday.

I have been having a really hard time in the past few weeks with not being able to eat like everyone else. I have discussed it endlessly with M, trying to figure out how I could eat more orally without getting sick. M doesn't encourage my oral eating because he has to deal with the consequences as well (I usually eat on weekends, so as not to have me feeling sick interfere with work - but that also means that M has to deal with me being sick on weekends when he wants to spend some quality time with his wife.)

M of course couldn't resist yesterday evening when we talked on the phone - being very sarcastic and telling me that we should really talk about me eating more orally.... "leave me alone" I said - the thought of food adding to my nausea.... I really am grateful about my feeding tube, even though I do have my moments. It's just that sometimes I simply crave normalcy.

Sunday, November 6, 2011

My job interview went alright. Even though I am not as sure anymore if I would be able to take it if they offered it to me. The problem is that M and I share a car and I won't be able to take the car every day. I expected work to begin at 8 AM, that way I would have been able to take the subway/train having to leave at the same time that I leave now. But I was informed that work begins at 7.30. This means I would have to leave at 5.15 in the morning (and getting up at around 4.30). I won't be able to sleep on the train as I have to switch trains a few times. I honestly don't think that I physically can do that. Even at my current internship when I am out and about 12 hours a day I have hardly any energy left for fun stuff. And on the weekends I end up sleeping half the time to try to recouperate (like today - I stayed in bed until 3 PM, reading, surfing the internet, and sleeping...). I have been meaning to go to the gym for weeks, but have not had the time nor energy to do so.

On a more positive note - the apartment is almost finished ;-)! Only a few more cupboards and the storage room to organize! We have even hung up our pictures! It really feels good to live here and we love our new place. The cats still spend time on the balcony, albeit a lot less with the colder weather. Sometimes they can be very, very annoying: "I want out!" "Let me in!" - in a matter of minutes.... Yesterday we almost forgot Aaliyah on the balcony. It wasn't until we went to bed and couldn't find her that I had a look outside and found her all huddled up in the cold. Poor kitty... I am curious to find out if they will grow a thicker coat this winter, now that they are spending some time in the cold.

Tuesday, November 1, 2011

Only one month left in SP and then off to new adventures ;-). I already have begun to search for jobs, not that easy in Vienna. But - I have a job interview coming up for a temporary position at a neuro rehab clinic. I really, really hope that they will like me. I would really love to work there, even if it is only a temporary position. And I am so ready to finally earn some money, especially after those past 12 months of working a 40h job with almost no money in return.

I will still need to commute, but not as far (if I get to take the car, if M needs it and I have to take the train it will be even further). But I really hope that even though I will be out and about for so many hours of the day again that I will be able to find more time to take care of myself. My dietician really wants me to build up more muscle mass, but I have not been finding the time at all to go to the Gym.

My tube site is looking really well, hard to believe that I have only had this new tube for two months. The very tiny bit of granulation tissue that I had is starting to subside and therefore leakage is down to a minimum. I am very proud that I have another good looking stoma to show off.

All in all I am doing quite well, still thriving on my tube feeds, having only minimal symptoms as long as I stay away from food.

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.